The following is an adaptation of my contribution to Silent Tears a project by renowned Photographer Belinda Mason documenting the plight of women throughout the world subjected to violence, in this instance, a medical violence. More information can be found here.
In 2000 at the age of 37, I was diagnosed 47 XXY meaning I have one sex chromosome greater than Male 46 XY and Female 46 XX, and although I was raised male my body did not produce sufficient testosterone that would have allowed it to virilise in line with my peers. In that absence my outward physique developed along female lines, it was something that seemed obvious to all who knew me, yet having been raised male and not knowingly being aware of another person who resembled my physique, I had little options except to put it to one side and hope that one day I might meet others who looked like me.
When I was diagnosed, the Endocrinologist informed me ‘Testosterone would make me a man and bring meaning to my life” naturally I jumped at the opportunity as all I had ever wanted was to fit in and I knew it was not something I had ever experienced to that point. Being told I was sterile did not faze me in the slightest, not least because I still felt like a child myself albeit a 37-year-old one, and thus felt incapable of looking after another when I could barely look after myself. Without any counselling to gauge if Testosterone injections were right for me, they were initiated at 200mg every fortnight and within a matter of months, I had begun to feel very uncomfortable about what the Endocrinologist had said. In place of “meaning” my phallus had overtaken my brain and the thoughts of sex and masturbation were constant consuming my every waking moment, my thoughts on sexuality firmly centred on me being a woman in a heterosexual relationship, I was for all intent and purposes, losing my mind.
On mentioning this to my General Practitioner (GP) his view was the dosage should be broken down to 100mg over a seven day period, it being basically the same amount but with greater frequency. Within six weeks acne had appeared throughout my entire body being particularly bad on my upper back and chest areas resembling enormous boils extremely sore to the touch that bled while I slept. My thoughts on engaging in sex were now constant and were only slightly lower than my thoughts on suicide. On speaking with the Endocrinologist he didn’t seem at all fazed and said words to the effect “it was an initiation period and within three to four years it would all be over and I would feel better” I remember saying “if this is what my life came down to, then I didn’t want any part of it and that I would eventually find a means to kill myself”.
Unwilling to give up and yet uncertain how to proceed he referred me to a Psychologist whose speciality was counselling Transsexuals, after my second visit she (the Psychologist) said I did not display the classical characteristics of being Transsexual, that instead I was suffering from severe anxiety through my use of exogenous Testosterone and recommended that it be stopped immediately. On a follow-up visit with the Endocrinologist, he said there was nothing further he could do for me that he would write to my GP informing him testosterone was not right for me and that it be stopped immediately. Subsequently, the GP also released me from his care saying there was nothing else he could do for me, realising my life was spiralling out of control he told me to find a psychiatrist and that he would write a referral. That was the last I saw of all those doctors but, it was not the last of my troubles which it seemed had begun in earnest
From there on life took a turn for the worse and I found myself really confused about my gender, my sexuality and a host of other issues one might expect of a teenager progressing through puberty, certainly not something becoming of a near 40 year old, who had become accustomed to a life that felt different and had to some degree accepted this was my life and I would have to make the most of it. My initiation of Testosterone turned all of that on its head and for the first time I realised I was not the person others had believed I was, but who was I, what was I and where did I belong in this madness of blending and fitting in me, I had so many questions and yet no one in my immediate circle capable of answering any of them. At this point,my every waking moment and hour of each passing day was consumed with ideas of not knowing who I was and the realisation my journey of self-discovery was not something that I could ever accomplish alone. Dysphoria it being something I had never experienced before was now front and centre of everything.
In desperation and not knowing where to turn, I wrote a heartfelt letter to a Gender Clinic in my area and told them of my journey, while they never truly grasped the seriousness of what I was experiencing, namely how XXY impacted on me, they were nonetheless willing to support by whatever means they could thus following several weeks of counselling I was referred to a Psychiatrist whose speciality was treating people with gender issues, I was surprised to learn he had previous experience with XXY and well understood the impact exogenous testosterone would have on an individual who had not previously been accustomed to it and more importantly an individual who wanted no part of it . My eventual diagnoses of Gender Dysphoria (Not Otherwise Specified) was reserved for people with an atypical experience and used to describe people born with Intersex variations who had difficulty adhering to standardised treatments of care. His subsequent referral to an Endocrinologist stated that estrogen should only be prescribed for a short time to counter the effect of heightened Anxiety I had experienced. He agreed with the earlier Psychology assessment of not displaying the characteristics of Transsexualism and was intrigued by my rejection of masculinity and how I viewed my gender as both male and female with an emphasis on female, it was an interest that saw him put pen to paper and write several articles published in the Australian & New Zealand Journal of Psychiatry around XXY people who came to reject a medically assigned gender identity.
The experience with my NEW Endocrinologist was mind-blowing, in him I had finally found someone who understood XXY in all of its complexities, and I only wished I had seen him from the onset as it would have saved me from so much confusion and depression that brought me to the brink of ending my life. As with the Psychiatrist, he also shared a mutual understanding of XXY, informing me he had several XXY patients who also struggled with Testosterone and under his guidance had been administering Estrogen for long periods of time. He paid little heed to the Psychiatrist’s recommendation of how Estrogen should only be for a short time, saying he was willing to leave me on for as long as it was benefiting me. Ten years on and with his support and guidance, I have finally become the person I had always known myself to be but had lacked the courage, vocabulary and life experiences in order to achieve it. Looking back, I can quite honestly say I have been to hell and returned and in that process have proven them wrong, that there is a life after testosterone one that’s far more rewarding than anything I could ever have achieved from heeding the original doctor’s advice and staying with the virilisation program.
A little over a year ago at The Australian Human Rights Commission’s initiative ‘Resilient Individuals, Sexual Orientation, Gender Identity & Intersex Rights’ I happened upon the Psychiatrist who had listened so intently to my plight and saw to it that I was placed in safe hands that would eventually guide and make sense of who I was, he looked at me and said “you’ve arrived” I told him I could not have achieved it without his support, he replied ” I was a tough one to understand yet he was really glad to have experienced ME” to which I replied “so was I”
Morgan Carpenter Co-Executive Director of Intersex Human Rights Australia was invited by Silent Tears to comment on my experience, this is what Morgan had to say.
When a concept is new to us we tend to think about it in familiar ways, it’s only when we learn more that we understand differently. It’s only recently that people are beginning to understand the differences between being Gay, Lesbian, or Bisexual, and being Transgender, between people who are same-sex attracted, and people whose gender identity is different from that assigned at birth.
Being Intersex is a new concept for most folks, and so it’s often confused with those other concepts, but here’s the thing, Intersex people can be same-sex attracted, or straight, Transgender, or not. What Intersex people have in common is something different, something physical. Intersex people are born with sex characteristics that don’t meet medical or social norms for Female or Male bodies.
Those differences are stigmatised and so they are medicalised. So we talk about Intersex traits as relating to gonads, hormone response, genital or chromosomes. And we talk about Intersex traits in terms of diagnoses and treatment, of “disorder of sex development”, and medical treatments that don’t meet human rights norms.
Because Intersex is stigmatised, the treatment or even elimination of Intersex traits begins early: through IVF embryo selection, through terminations on grounds of “serious genetic conditions”. Medical interventions include cosmetic surgeries that are known to lead to poor sexual function and sensation and hormone treatments to make someone “normal” without letting the individual make their own decisions about their body. Institutions from an Australian Senate Committee, to The Council of Europe and the UN body that monitors State actions against the UN Convention against torture, have condemned such medical interventions – but they continue today.
Women typically have XX chromosomes and Men commonly have XY chromosomes, but some people have other chromosomes, XXY is one of those traits where individuals have an extra sex chromosome. XXY is often diagnosed as Klinefelter’s Syndrome but the diagnostic terms presume the individual is male. Exogenous Testosterone is the standard prescription even applied to infants and without the kinds of counselling that can let the individual make their own choices about their identity and treatment. All people with Intersex traits can experience lifelong trauma after coercive treatment, or treatment based on ensuring we fulfil social expectations.
I first met Candice online at “Bodies Like Ours” a support group where we were both trying to come to terms with our bodies, and even more so with the medical treatment, we received. Candice was still trying to survive the effect of having been exposed to exogenous testosterone and I was recovering from the impact of multiple surgeries. Like anything else, some things get easier over time, and some things need to change to make them right.
People with low sex hormones like XXY folk are obliged to take one sex hormone or another for their Physical and Mental health. Both hormones testosterone or estrogen have a dramatical physical and psychological impact. Candice was placed on testosterone in order to make her a real man without any real thought whether it was the best choice for her. No choice was considered. But, when testosterone was causing so much distress and pain, estrogen had to be an option and that meant dealing with what people think it means when you don’t conform to expectations. Not just the expectations of her doctors but also those of society. It’s a curious thing that those doctors included newer ones to check her mental health yet they weren’t considered necessary when starting the previous hormone.
Candice is stronger as a result of her experience, more confident and the happiest I’ve ever seen her. Freed of an inappropriate hormone regime her friendship and company is a joy.
XXY folk and other people with Intersex bodies are able to contribute to society but fear of non-conformity, of benign genetic and physical differences, means that pregnancies where a fetus with XXY are often terminated. Natural human diversity should not be regarded as a pathology something to eliminate when instead, we need to celebrate the richness and breadth of human experience. If we can eliminate fear and stigma then the paths that we tread will be accompanied by far fewer silent tears. “-Morgan Carpenter